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Still tired with cpap

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e92type +0 points · 6 months ago Original Poster

I’ve been on a cpap machine for about 4 years now and for that long I don’t think it’s working. I’m 34 years old male. I was diagnosed with obstructed sleep apnea along with other conditions like overweight, prediabetes and hypertension. I was able to reverse all of it through ketogenic diet and lost about 35lbs. I am now at my goal weight. I’ve been through it all pulmonary, cardiologist, ENT and all of my tests are normal. The only thing I have is anxiety I get PVC frequently. Anyways I’ve had many type of machines and masks now I have the Phillips dream station and the philips dream wear. I’m also able to change my own pressure I know the little trick to do it. Even so with my prescribe pressure it’s not cutting it. I used a humidifier and the tube as well with or without it still same results. I tried messing with flex nothing helps. I miss waking up refresh and it’s a hit or miss hit thing. But I feel more tired than refresh more than anything. My ahi levels are good and no leaks either.

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bonjour +0 points · 6 months ago Sleep Commentator

Dreamstation is a model series, which 1 do you have?

I would suggest posting the daily detailed view from Sleepyhead. The data will help you to get much better advice. How are your Flow Limits and RERAs? One other thing prediabetes is to diabetes what Stage 1 is to cancer. You HAVE diabetes, just at an early stage.

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e92type +0 points · 6 months ago Original Poster
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Sierra +0 points · 6 months ago Sleep Innovater

As bonjour suggests a good starting point is to download SleepyHead and post a screenshot of your Daily Detail. It will look something like this. It is freeware and you need a PC or Mac and a SD card reader to transfer the data from your machine to the software.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

Hi e92type

It sounds like you have done very well.

Congratulations on accomplishing what so many of us wish to, but rarely ever manage.

I would love to know what steps you took to achieve it.

Without numbers I am only hypothesising but if you have largely removed the cause of Apnea why would a CPAP machine help you to feel refreshed?

What happens if you sleep (on your side) without the machine?

There could be many other causes for tiredness.

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e92type +0 points · 6 months ago Original Poster

Thank you very much it’s quite simple really and it’s easier said than done. Research ketogenic diet. It has help a lot of people reverse prediabetes and even stage 2. It’s pretty much a high fat, mid protein and little to no carbs. It’s tough but there are thousands of success stories and I’m one of them.

I know there are many factors and contributions on why I feel so tired. I feel generally worse without the machine even sleeping on my side. I usually get headaches or my throat really hurts.

With the machine I feel a bit better no headaches but I just don’t feel the energy I’m still slow throughout the day. Like I haven’t slept at all.

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Ruby +0 points · 6 months ago Sleep Commentator

I would think you also need to check that your anxiety and PVC's aren't causing fatigue. If all is good with the machine (try Sleepyhead) then other things need to be ruled out. Sounds like you have checked on a lot of them but sometimes a low normal reading can cause problems.

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MarkHanson +0 points · 6 months ago

I trust that you have shared all of this with both your Sleep Doctor and your durable equipment provider. If not, please do so.

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txmnjim +0 points · 6 months ago

I sure wish I knew how to change the pressure rate on my Phillips box...I'm having to set up another apt as they haven't seen me in a year and refusing to do so over the phone! Bad thing is my insurance rarely pays all the bill and usually sticks me with about $200 charge :(

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Sierra +0 points · 6 months ago Sleep Innovater

In your first post you said:

"I’m also able to change my own pressure I know the little trick to do it. Even so with my prescribe pressure it’s not cutting it. I used a humidifier and the tube as well with or without it still same results. I tried messing with flex nothing helps. I miss waking up refresh and it’s a hit or miss hit thing. But I feel more tired than refresh more than anything. My ahi levels are good and no leaks either."

If your AHI is good and your leaks are good, what would you accomplish by changing the pressure? As was mentioned before if you post your SleepyHead results we may be able to help you better understand what the machine is doing or not doing.

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txmnjim +0 points · 6 months ago

i was wanting to change my pressure since i've changed from a full mask, where i felt i was gasping for air so i needed it very high, to only nose pillows where i will need it much lower. thankfully, the docs are working in tomorrow! jim

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Sierra +1 point · 6 months ago Sleep Innovater

There may be a slight difference in pressure requirements for a nasal mask vs a full face mask, but it is unlikely to be significant, and I couldn't even guess which one might be higher. It may depend on the machine and the mask model. These machines do not measure the pressure right at the mask. They measure the pressure at the machine, and use algorithms to estimate the pressure at the mask, considering the hose type used, and intentional vent air required by the mask. If there are differences in pressures need due to the mask it is most likely due to errors in the estimation of the mask pressure.

The real pressure requirement is determined by the degree and type of apnea you are suffering from, and should be quite independent of the mask type. The most common mistake in setting the machine up is to have the pressure too low at the start of the ramp up. The DreamStation has a SmartRamp feature which will hold the pressure at a comfortable level until you go to sleep. I would ask your supplier to set it up for you with a ramp start pressure of about 7-8 cm. They should know how to do that.

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bonjour +0 points · 6 months ago Sleep Commentator

There is nothing different about different pressures needed between masks. By experience I've seen no difference to 1 or 2 cm more pressure needed fora a full face over pillow masks. YMMV as usual for all things.

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KangarooTailStew +0 points · 5 months ago

I had to turn the pressure down for nasal pillows too.

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Sierra +0 points · 5 months ago Sleep Innovater

The thing to keep in mind is that the important pressure is the mask pressure. What most people look at is set pressure which is measured inside the machine. Then the machine estimates mask pressure using what you have told it for mask type and hose type. There is always pressure drop in the hose and mask and the machine has to compensate for that. I think the problem is that the compensation is not perfect. So, one mask may have a more accurate estimate of mask pressure than another mask. Suspect it has nothing to do with the mask type, but is due to the estimation effect.

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txmnjim +0 points · 6 months ago

thanks Sierra! i'm seeing them today...

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Nimbus1 +1 point · 3 months ago

I hope I am not writing this out of turn. I have recently failed CPAP and then prescribed a Bipap Respironics Auto Pro. My problem remains I do not feel refreshed even after using my CPAP and now, I don’t feel any better after a nights sleep using my new Bipap. My events swing wildly from one night to the next. For example, one night I will get an AHI of 19 and the next night I get an AHI of 109 and, two days later I got an AHI of 106. My current month AHI average is over 30/ hour. I also have severely high central Apnea as well. My doctor wants to order the MSLT test for Narcolepsy but for some reason I don’t feel I have that. My problem continues to be that even after sleeping with my Bipap Full face mask within a couple of hours I cannot concentrate because I am fighting the urge for me to go sleep. So, I have to take multiple naps during the day. I don’t feel rested and would really appreciate any help from anyone here. Thank you in advance.

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Sierra +0 points · 3 months ago Sleep Innovater

With those kind of numbers it seems that your BiPAP is not working for you or perhaps is not set up properly. My suggestion would be to download SleepyHead and have a look at your data in more detail. If you need help with that, just post the Daily Report screen here for comments. This branch of the software has stopped development, but it still works. It is the one I am using.

What kind of numbers were you getting with the CPAP machine?

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Nimbus1 +0 points · 3 months ago

Hi Sierra, Yes I was getting high AHI scores as well. And they too seemed to be highly variable. That's why I failed CPAP. My Pulmonologist after looking at the SD card data said yeah, you're failing CPAP. and said we need to get you on BIPAP. But he said if he didn't have to listen to insurance managed care onterference, he'd bring me in to do that 2 day MSLT test for narcolepsy he'd recommend that. My issue is that the Sleep lab told me the only way to get the MSLT approved would be to get me back on the sleep lab re-titrate do I get fewer than 5 APNEA events per hour. She seemed pretty surprised I'm showing my high apnea events because she said her sleep already titrated me below the magic 5 events per hour. What irritates me is the time involved doing this. I keep telling my doctor and RT that I remain concerned driving because doing so means high chance of falling asleep. I hope I am not complaining too harshly just that I'm aggravated with all this. My wife cannot drive me everywhere. She's pretty much become my driver. Can you explain what I need to do with sleepyhead software. I'm not the most technical guy. Thanks!!

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Sierra +0 points · 3 months ago Sleep Innovater

To run SleepyHead of OSCAR which is a bit more recent version you need a PC or Mac computer with a SD card reader. You transfer your data from the card reader to SleepyHead. Then you can view the detailed data on SleepyHead. With a PC you press the F12 key and it will save a screenshot when you have the Daily Report displaying. Watch where this file is saved, and then left click and drag it to the body of a post here. It should look something like this. What you are looking for is some relationship between pressure and the incidence of central apnea events. This is one of my earlier nights when I was having more trouble meeting the AHI of 5 target. I also suffer from central apnea. You mention having a titration test where they got AHI below 5. Do you know what the recommended pressure was from that test? It would be helpful.

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Nimbus1 +0 points · 3 months ago

Hi Sierra, Thank you for responding. At my last sleep study they increased my pressure from 7 CPAP pressure to Bipap titration 13 ex and 9 inhale. That night they said my events dropped to zero which I question because I continue to see events really high and being really variable. When I get back, I will a SD reader and download sleepyhead. What do you suggest download sleepyhead or the Oscar program. I’m very unknowledgeable about both. Thanks for all the help. When looking at report, what items should I keep an eye on? Any ratios algorithms normal vs abnormal? Tx!!

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Sierra +0 points · 3 months ago Sleep Innovater

Either program should work fine. At this point they are nearly identical. OSCAR may be improved in the future, but SleepyHead development has stopped.

What you are mainly looking for is the impact of pressure on the frequency of your central apnea events. There are two basic strategies followed to deal with central apnea., and a third if the first two fail.

  1. Minimize the pressure to as low as you can. The idea is to have the pressure high enough to reduce the obstructive apnea to acceptable levels without causing excessive central apnea events. It helps with this strategy to NOT use EPR or the FLEX feature which puts a differential between inhale and exhale pressure. It also seems to work best to have the machine in fixed pressure CPAP mode so the machine does not push pressure up too high in Auto mode. I would not discount this method if you have not already tried it. Most BiPAP machines can be put into the CPAP mode, so this would be any option to try if you have not already done it.

  2. If that fails then there are BiPAP machines that put a higher pressure split between inhale and exhale, which sounds like where you are now. Some machines detect that you are not attempting to breathe and will cycle the pressures to try and help you breath.

  3. If neither of these approaches work, then the last resort is an ASV or Adaptive Servo Ventilation machine. These take the breathing assistance one step further and monitor each breath you take and on a breath by breath basis assist with pressure.

Hope that helps some. If you post your SleepyHead Daily report I may be able to suggest more.

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Nimbus1 +0 points · 3 months ago

Hi Sierra. Thank you for all the ideas and help on this. I've not gotten Oscar or the other program. But, I've since seen my doctor and he's scheduling a MSLT narcolepsy test whenever insurance will approve. Personally, I don't think that will happen for a while since my sleep study office is saying insurance will only pay if my AHI is below 5/hour before they will approve the two day or so test. What the sleep study place is saying is that I will have to get another bipap titration test again this time with the goal of getting it down below 5/hour which is the same goal as the recent bipap titration study had the first time. Plus, my events will need to show that the AHI is 5 or below? Interesting? What makes no sense is that is what happened the first time; which means the office bipap titration study of which they said they got my APNEA AHI below 5 the first time they are now going to do same same test with same goal with probably same outcome?? Wasn't that close to the definition of insanity, expecting different results but with same goal? I did try to get a few things done as per your suggestions but it appeared that they'd (doctor) prefer to not have someone suggest something they have no training in. So, I remain tired, not driving much unless wife is with me, and taking multiple naps throughout the day making me feel like I'm extremely ancient. However, I've since seen my PCP and he's referring me to a neurologist and ENT. In the meantime, I will try again to get a SD reader and download those programs (probably Oscar). Again, thanks for all your help and ideas. Again, thanks Sierra for all your help!!

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